The MDF went to Washington, DC, last week to represent the DM community and participate in the Rare Disease Legislative Advocates Conference and Lobby Day.
Myotonic dystrophy symptoms tend to worsen gradually over several decades. While no treatment exists that slows the progression of myotonic dystrophy, management of its symptoms can greatly improve quality of life. Taking steps early to prevent or treat problems as they come up can help avert complications.
The congenital and childhood-onest of DM appear earlier in life with more severe symptoms. Therefore they present more and different management challenges than the adult onset forms of the condition. Pregnancy in affected mothers poses serious complications for both the mother and the newborn, often requiring intensive intervention.